My Role in Research: Shona McIntosh - Lead Nurse for Palliative and End of Life Care

Shona McIntosh

Shona McIntosh is Lead nurse for Palliative and End of Life Care at North Bristol NHS Trust. She shares how she was initially spurred into doing research due to perceiving an unfairness in treatment paths of two groups of patients. Plus, thoughts on balancing clinical work and research. We spoke to Shona as part of our #MyRoleInResearch series. 

The specialist palliative care team at NBT works in an advisory capacity 

Patients who have life-limiting diseases and are approaching the end of their lives are referred to us by their ward medical or nursing teams. We meet patients, assess their physical, psychological, social and spiritual needs, and provide support and advice for them alongside their loved ones and our colleagues. Half of my working time involves trust, local, regional and national management around palliative and end-of-life care. I work as a clinical nurse specialist in the palliative care team for the rest of my time. 

My background is in surgical and intensive care nursing 

I have also worked for five years as a vascular clinical nurse specialist. I have spent the last 14 years working in the specialist palliative care team where a lot of my clinical time is spent planning discharge and symptom management for patients with all types of end stage disease.  

I first got into research because I noticed a disparity in treatment for two patient types 

I have known for a long time that the support and information provided for patients with cancer and for patients with non-malignant end stage diseases was different, despite the two groups having the same physical, psychological, social and spiritual needs. Patients who have a severe stage of peripheral arterial disease, chronic limb threatening ischaemia (CLTI), often have a less predictable disease trajectory than patients with cancer. As a result, patients with CLTI are often not recognised as reaching the end stage of their lives until the very late stages of their disease, meaning that early discussions around aligning their priorities for care might not happen. I felt there was an unfairness between these two groups of patients. 

I decided to investigate why it is that patients with CLTI don’t have their prognosis discussed with them in a timely manner. I couldn’t find any research about this topic at all during my literature review, so I decided to carry out some research of my own. 

I felt there was an unfairness between these two groups of patients.

I wish I had known far earlier about the support Research & Development offer 

I thought I was going to have to plough along on my own for a while. I knew what I wanted to do, and I knew what I wanted to achieve, but I had no idea how I was going to go about doing it. Since making contact with Research & Development (R&D) and having a conversation about my thoughts, I have had extraordinary support from the team. Who knew you can just come along and say, “I’ve got this idea, what do I do with it!” 

I’d advise someone considering research to first find someone to talk to 

Find someone who can be realistic about what you are able to do, the support you might need, the order you need to do it in, and how long you need to realistically achieve it in. The support I have received has helped me take this jumble of thoughts out of my head and get them into shape. 

I think Nurses and Allied Health Professionals (AHPs) tend to live with a clinical problem, so often they’ve known about it for years. R&D can help work out whether this is an area that you can research. You don’t have to plan a massive project, and you there is no expectation that you aim for a big qualification, but they can guide you to do a proper literature review, write it up if you wish, and get it published.  

Nurses and AHPs don’t think of themselves as ‘academic’ 

But you don’t have to fully understand the research process, know how to apply for grants and write up papers to be able to do your own research. Nor do you have to have a head for finance, because R&D can help with all of that. 

You don’t have to fully understand the research process… to do your own research. 

Balancing clinical work with research work requires self-guidance and self-motivation 

I have been allocated one day a week for the last two years to carry out my research. Occasionally I have struggled with carrying out my research plans one day a week and then picking it up a week later, and there have been episodes where clinically I have not been able to take my research day. In which case I have taken a week at the end of the month, which works much better for me. It is a different way of working for me. However, because I have a clinical role in the area I’m researching, they play beautifully along together. Issues I have been talking to my patients about have fed back into my research, and vice versa. 

I’m now at the end of my second research grant 

It has allowed me time to complete a systematic review, and to send a survey to UK-based consultant vascular surgeons regarding their views about palliative care for patients with chronic limb threatening ischaemia, which will hopefully be published in a European journal soon. Over the last two years I have also contributed the end-of-life chapter to national vascular guidelines, been part of the James Lind Alliance panel, and have had three national presentations. 

I am hoping to apply for a Research for Patient Benefit (RfPB) NIHR grant next year to continue my project. I continue to get extraordinary support and encouragement from the R&D team at North Bristol NHS Trust from the planning of each part of my project, to funding it, accessing relevant support and guidance, and producing articles for publication. Very many thanks to you all! 

Further information 



My Role in Research: Shona McIntosh - Lead Nurse for Palliative and End of Life Care